Building my life after the devastating effects of Necrotizing Fasciitis
(The Flesh Eating Bacteria)

Sunday, April 19, 2015

Dear Mr. Surgeon,

"I just want what everyone else has"

...says my friend, as she tries to work her way through a controversial issue.

I could relate to that. I could relate to that because I also want what everyone else has. I want decent health, and to stay away from doctors for long periods of time.

I'll bet that the surgeon who was responsible for the original surgery which lead to NF gets to have decent health. No, I don't know that for a fact. Just like my friend doesn't know for a fact that everyone around her has what she pictures as "normal". But it's what we all imagine.

I certainly couldn't have imagined this. When you look at it, it's pretty unimaginable.
How can it be..... HOW can it be, that almost 8 years later I am still in this #*&^ (fill in the blank)?

I can't even delineate all that is in conflict with what I pictured myself to be. This is me now, but THIS IS NOT ME! At what point do I stop waiting for ME to get better? It is just such insanity living this way; going to doctors- [wasting time at doctors offices] sometimes it's a few times a week (including physiotherapy and lymphatic draining). Every week. Sometimes with an out-of-town trip which wipes me out. Before the surgery to fix the [so-called] hernia back in 2007, I never saw doctors, unless it was for pregnancy. And even then not much.

I mean, I can't tell you why I need to sleep so much, or why I get dizzy and conk out all the time. I want to know why. I am working to balance the problems in my body, but I am sick of working at these problems. Then, of course, there is the pain from both my hips. It's totally a full-time job, between the doctor's offices, tests, phone calls, and needing to sleep. Oh yeah, and being a mommy to four kids, a wife, and the main caretaker for a large house.

"I just want what everyone else has."

Eight years, and although I am not disregarding real progress made, I am way different than who I want myself to be, physically. I want to have no acute problems, just like so many people out there.
I hate wearing the pressure garment every day. It is hot, tight, un-giving elastic with a foam pillow filling in gapey. It's not like regular elastic, it's material made for people with lymphatic swelling problems. If I don't wear it, the lymphedema problem returns with a vengeance, and gapey hurts.

As we know, something is going on in my right thigh joint, and in my worst, deep down fear, I think it's a cancer tumor. There, I said it. It could also possibly be PVNS, which is like a cancer.
The CT scan was pushed off for another two weeks for technical difficulties (theirs, not mine), so we'll have to wait on that.[for anyone new to the blog- the definitions of "gapey" and PVNS are at the right sidebar...]

.....next day continuation....

The update today is that I have my CT scan later today (Sunday). Soroka hospital called me to make it earlier, so that's good. I also will be accompanied by a close friend, which is also a great perk for me! Most of the time I do my medical stuff alone. This CT scan will take about two hours because it involves the contrast dye- iodine. I have to drink a few bottles of icky stuff, then wait till it does it's contrast thing in my innards, then do the scan. Even though the scan is to see what is going on in the right thigh/groin, in order to have the contrast dye for that area, I have to have it flushed through my entire abdomen. Not great for kidneys, I wish there was a better way. But, at least it is today. Hopefully results will be within a week.[Addendum to the CT scan- I had it today, and I didn't need to drink the iodine stuff! I had it shot into an IV during the CT, but at least I didn't have to drink two liters of the stuff. The push of iodine into the IV is quite uncomfortable, and afterward it took a while to feel normal again, but the bottom line is that it went OK, and it's over. Results within a week.)

How can one nasty infection, and many surgeries (related to said nasty infection) within a short amount of time render an otherwise healthy, vibrant woman half of who she wants to be? I still want to see myself as the active, vibrant, productive Sarah I was before May of 2007. But I have to accept this Sarah, for better or for worse.

To the surgeon from back then: are you listening? I want you to know. I know it's my life and not yours, but your decisions shaped my life in a way I didn't choose. I mean, my decisions shape my life now, of course, but you had my life in your hands eight years ago and you were careless with it.
Too bad we don't have a crystal ball. Hindsight sucks. Having said this, Mr Surgeon, I don't harbor anger. I know you never actually meant harm, and I remember that you apologized not once but twice. What I feel toward you is so mixed, not for blog writing. I wish we could talk. Maybe some day. Obviously now isn't the time.

(For all of you who look to me for inspiration- sorry, not much of that flowing out of me today. Get back to me next time, hopefully I'll have a better outlook.)

17 comments
:

Hugs, Sarah. I wish I had something inspiring. Only that I remember at some point you saying that before all this your life was so full perhaps you didn't have the time for your children you would have wanted and that now you have learned to be more present to them. Perhaps I'm remembering that wrong but I'm pretty sure. But I view each day of you with us as a present. You could have been lost to your husband your children your family and friends back when this all started, and I am grateful you were not. You will continue to inspire us with your courage and perseverance and words of wisdom as you write your book. Just remember that and enjoy each precious moment with your children. Hugs!

honestly, if it werent for the children, I'd be an empty shell. They are the blood running through my veins when I am weary from chasing my health as it runs away. Yes, it's totally true that before I got sick I didn't spend enough time with the kids, and the time I did spend wasn't quality because i was so busy. SO these years I've been a stay at home mom have been a tremendous gift to them, and for that I am grateful. I just wish that I had more health and energy to offer them.

Willing to invest in some guided imagery that focuses on healing messages? We can discuss that face to face. Meantime, remove cancer-promoting foods from your menu 1 at a time (severity usually backfires): wheat products, sugar, dairy, fats. No ginger. NONE. Say brakhot out loud, and remember that they change the composition of molecules in our food/drink into healing, positive properties (https://www.youtube.com/watch?v=tAvzsjcBtx8). You can look at the calendar each day, remind yourself that Iyar stands for Ani H' Rofekha, and dance. Dance, sing, indulge in happiness every which way. I have more to share with you over YH weekend. BTW, kiss raindrops. They're full of brakhot.

1) I also have pain in the joints in the hip. In my case it was Piriformis Syndrome. However, I am not sure if you were describing the same thing, but I thought I would mention it. Google it. It can be very painful and doesn't show up on CT scans, etc.

2) As far as the cannabis is concerned are you sure you are taking the kind that is higher in CBD and lower in THC?As far as I know only Tikkun Olam has that strain and it is only available as the raw herb not in drops. Check with your provider.

I had a friend who also had a very strong reaction from one drop and he eventually stopped it. But double check about the THC content in your drops. It doesn't sound right to me.

Hang in there. Have a nice chag. And I apologize in any way if I gave you false hope about the cannabis. For me it is perfect.All the best!Yecheskel

Hi Yehezkel,No need at all to apologize! Not at all! I so appereciate all your support and information. I still do! I know the Cannabis has been a tremendous help for you, Baruch Hashem. You may be right that it is too high in THC, and I should check that out. For the time being, though, I have stopped taking it altogether. All things being equal, I'd rather have as little drugs in me as possible. If I can deal with the pain as it is now, OK. I do use it when my restless leg is acting up. That, to me, is almost worse than the pain. But, I am not completely off the Fentanyl yet, I still have two doses to go, and I have put a halt to the weaning process because I was getting myself sick from it. I do plan to completely wean, though, and only then will I know if the pain will intensify or not. Everything will get sorted out, b'ezrat Hashem.

I don't think it's piriformis syndrome. I suppose anything's possible, but it doesn't match up with what i've read about that (having looked it up just now). I have had two surgeries on my left hip joint because of a disease called PVNS. My right hip, I know from CT imaging two years ago, has a torn labrum and impingement. That is the surgery i was going to do last summer- to fix it- but that surgery got canceled when i had an allergic reaction on the operating table. So, we know that the hip has an orthopedic issue that I m dealing with. There is new pain, though, for about 6 or 7 months, and that is what the CT is to investigate. I am worried that the PVNS is going bi-lateral- it wouldn't be unusual, unfortunately. We'll see. If the CT shows up with nothing specific, then I'll hope to ignore the new pain and not persue more imaging until my regular MRI in July (which i need every year for follow-up for the PVNS). Those all are complicated explanations, does it make sense at all?

Thanks again for your support and caring! I do hope you are managing OK. How are you?

your words bring strength and perspective to many. you keep smiling. i dont think just to grin and bear it....but to let that little light shine through when it can. thanks. def. ain't simple or easy.......(i can say from my own battles/struggles...)Michael

My dear,Thanks for the compassion! That is a lot.You know I use the blog to bitch and whine, right? I can't do that to my friends on a regular basis, and certainly not to my husband, so I really do use the blog to beat up and write out all my frustrations. It is never the case that what i write is my reality 24/7, just my thoughts and issues that I can't barf all over my friends and loved ones. Does that make sense? I guess what i am saying is not to feel too bad... all bad things pass, and good things are always around the corner. (remind me I said this when i am in a particularly bad jag in the future, k?)

Anyway, thanks for your love, support, and dedication. I feel it, and I so appreciate you!

Have you ever tried magnet therapy for pain? I broke my leg ten years ago and the magnets actually helped.

There is a company called Nikken (it is one of those multi-level marketing companies) that sells magnetic products. They have lots of sales people in Israel.I have their magnetic mattress pad. It costs a fortune, but someone gave me one for free. I can't decide if it helps me sleep better and with less pain because there are magnets in it or simply because it is so comfortable and gives so much support.It is like those egg crate mattress pads, but so much better.

I recently read this book and it made me think in new ways. I gave it to my Rav, so I am sorry I can't lend it to you.

In My Flesh I See God: A Treasury of Rabbinic Insights about the Human Anatomy

Seriously think about changing to Tikkun Olam and getting the low THC and higher CBD kind of cannabis.

I have heard that learning how to use and mix the different strains is the best way to go.

Hang in there. Maybe this is all a tikkun and has a higher purpose we can't understand.Yeheskel

Yup. I was even a distributor for a bit. I have many of the products. We did buy the mattress, but i gave it to my friend with matatastic breast cancer, and unfortunately, she passed away a year later. we didn't get it returned to us, and i don't feel comfortable asking her husband.

The magnets helped my husband's frozen shoulder. No luck for me, tho. The necklaces did help my migraines for a while, but that power stopped, too, after a certain time.

Good products, though, for sure.

thanks for your thoughtfullness!! :)SarahPS- that book you mentioned sounds fascinating. I hope to find it to read.

About me and the blog

This blog is about the hard stuff that has happened to me since I got sick... very sick, in 2007. When you read it, please know also that there is lots and lots of GOOD, amazing, miraculous things in my life. I need this blog, however, to get out the hard stuff.
That hard stuff started out with a simple run-of-the-mill surgical procedure to fix a small hernia I had. I was completely healthy before that. Four days after the operation, I was readmitted to the hospital in tremendous pain. Nobody knew what was wrong, some nurses didn't even believe my pain was that bad. Tests were done, nothing was noticed. A few days later I was taken in for an exploratory surgery to see if the source of the problem could be identified.
The next thing I knew after going under for the exploratory surgery was that I woke up many days later, from a coma, completely unable to move my body or communicate.
I slowly learned that I almost died from the “flesh eating bacteria”, Necrotizing Fasciitis. I had suffered tremendous bodily damage, but survived.
From that point on, my life has been taken over by medical problems, more diseases, many more surgeries and so much pain.
When asked what I do, I say I am no longer able to work, but I am an orchestra musician, I play french horn, and I am a birth doula. Since 2008, however, I have not been able to work.
I am blessed to be able to raise my four beautiful children and continue life with my loving husband, Robert. That is indeed my life's work. When I got sick, I was 39, and my kids ranged in age from 1 + ½ to 7. It has been an amazing, tremendously difficult journey we have all been on. I invite you to randomly read blog entries from this blog, as well as the CaringBridge blog, which can be found on a button under this write-up.
I appreciate all your letters and feedback either personally or on my blog. The support and encouragement I feel from my readers is the fuel for my writing. I thank you for joining my journey!

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"footbridge", by Ruth Gresser

Getting from one side to the other is where we find the colorful part of living...

People, Places & Things

Robert= husband, friend, anchor, ezer k'negdo.

Dov= oldest child, boy variety

Ya'akov= 2nd child, also boy variety

Shifra= 3rd child, girl variety

Azriel (Wazi)= 4th child, again, boy variety

Emma= my dog. We adopted her while she was pregnant (how else does a dog get to Sarah?), she had her 7 puppies here in our garden, we raised them for 3 months, and then one-by-one gave them away to new homes. We have Emma with us now, a dearly beloved part of our family.

Gapey= the large (26cm x 13cm, or 11in. x 6in.) wound on my left upper thigh/lower belly/groin after the debridement surgery took out all skin layers, parts of muscle & ligament

Scrapey= the other wound; the area all around my right thigh where the skin was taken in rectangular patches for the graft which was used to close gapey.

Shapey= the odd shape on my left outer thigh which was caused by the cellulitis infection (March 2008). It is still damaged looking, and remains sore to the touch